October is Down Syndrome Awareness Month. PDE is honored to present this guest post written by Linda Cartwright and Jacqui DiDomenico, two individuals who are integral to the disability community through their work as PaTTan Family Consultants supporting the work of the Bureau of Special Education.
Adversity makes strange bedfellows, they say. We like to say that adversity makes for wonderful friendships. And what, at first, may seem like adversity can be one of the greatest gifts you'll ever receive. This rang true for us, Jacqui and Linda, and our sons, Michael and Steven.
In the 1990s, the first editions of the What To Expect book series, …When You're Expecting and …: The First Year provided sound advice and guidance on various aspects of this new, exciting chapter in a mother's life; that is, except what to expect when your baby has Down syndrome.
Michael was born on New Year's Day 1997, a happy, healthy, second child to Jacqui and Mike. His unexpected diagnosis of Trisomy 21 wasn't confirmed for seven days. Jacqui and Mike spent that first week navigating their fears and reaching out for support. A friend's advice to the couple was, "Grieve the baby you were expecting, but love the baby you have." The following January, an in-utero diagnosis was delivered to Linda and Bruce; it was their first pregnancy. The news initially devastated them, so they, too, sought information and solace.
Back then, only one resource was provided to parents by medical professionals, Babies With Down Syndrome, a book chock full of everything negative that could possibly happen to your child, including fairly good odds of outliving them. Linda and Bruce began attending their local Down Syndrome Interest Group meetings, where they met Jacqui and her family. It's funny how, as an adult, you think you have all the friends you'll want and need for life. But then, your circumstances deliver you unforeseen relationships--you start friendships with the parents of your kids' friends or people who are in your 'same boat' and become your lifeline.
Over the years, the adult relationships strengthened, the children's friendship grew, and a lot of fun, support, advocacy, and even jobs were shared. Jacqui and Linda have worked side-by-side as Parent Consultants at PaTTAN, taking the knowledge and experience of raising a child with a disability, special education, and legal rights and requirements, and sharing it with families across Pennsylvania. They now navigate the world of raising an adult with an intellectual disability, with the help of humor, sharing and comparing stories, and a strong, supportive professional and personal network.
Michael and Steven grew up in an inclusive, supportive community, remaining friends for life. Though they didn't go to the same schools, events and family activities have kept them close. Both families were integral in the inception of a Trisomy 21 Program at The Children's Hospital of Philadelphia in 2002, primarily funded by a family fun day annual fundraiser that Jacqui's and Linda's families help organize and run.
Something good always comes out of adversity, like finding out that it was never adverse, just different. And you may discover that had you not been thrust into that unexpected, unfamiliar situation, you would have never reaped innumerable benefits, like a dear friend.